Background

The enhancement of recruitment strategies has become an important objective for many clinical trials and though research has investigated a variety of research design manipulations in this respect, there is a dearth of research on the perspectives of those who decline participate. Such exploration is also important to consider given that those who decline is often not accounted for in terms of accurately representing the population under investigation. Though this ‘flaw’ is inherent in all research that studies human participants, enhanced efforts to diminish decline and increase recruitment is not only important for statistical purposes, but also for strengthening the validity of conclusions regarding implementation in ‘real-world’ scenarios.

Objectives

To explore individuals’ decisions to decline participation in research trialling a Cognitive Occupation-Based program for people with MS (COB-MS) thus, informing feasibility assessment of the trial; and to extend research on recruitment to randomised controlled trials, more generally.

Methods

Seven semi-structured telephone interviews were conducted with willing participants who had previously declined to participate in COB-MS. Data were examined through thematic analysis, via an iterative, recursive process; characterised by continual re-reading of the data, data coding and thematic identification (e.g. development of categories/themes and hierarchical ordering). Thematic analysis facilitated the exploration of potentially important factors that required consideration in an under-researched topic. Subsequently, findings were presented to the public and patient involvement (PPI) panel for consultation regarding the implications of these findings.

Results

Results are presented and discussed in light of extant theory and research. Preliminary results suggest that reasons for declining may include misinterpretation of the participant information sheet, feelings regarding appropriateness of their candidacy for COB-MS, inability to commit to the COB-MS program and particular issues regarding the design of the study and/or program. Including perspectives of PPI panel added valuable insights that supported fuller interpretation and ensured ‘trustworthiness’ to the data.

Conclusions

Though reasons for declining to participate can be many and diverse, some could be avoided through further consideration and ‘amendment’ during future trial development. Development of program-specific Patient & Public Involvement panels may be particularly useful in this context. Despite the numbers who declined to participate, the COB-MS trial was well received by those who did not participate, who expressed finding the program to be acceptable and accessible.

Background

With an average age of onset of about 20-40 years, MS usually manifests during early adulthood, which is considered to be a critical period for the development and maintenance of relationships – particularly dating and romantic relationships. People with MS can experience sexual dysfunction, fatigue, pain, reduced mood and bladder/bowel dysfunction. These difficulties can affect a person’s ability to participate in many meaningful activities, including those that affect relationships – dating, preparing meals, engaging in sexual intercourse and others.

Research in the area has explored the experiences of people with MS in long-term relationships or in marriage. However, an increasing number of people are not in long-term relationships in their 20’s, 30’s and beyond. It is known that dating or entering romantic relationships has been shown to be difficult for those with physical disabilities who face stigma, negative societal attitudes and the fear of requiring care from potential partners. The experience of those with a progressive, complex condition like MS has not been explored in detail to date.

Objectives

To develop a rich understanding of the impact of MS on romantic relationships and occupations related to dating.

To better understand how living with a progressive, early-onset condition such as MS, interacts with/influences developing romantic relationships.

Methods

This study used a descriptive phenomenological design. Data were collected through two online focus group. A purposive sampling strategy was implemented to identify participants that have relevant knowledge or experience to address the research topic. Participants self-recruited by contacting the authors. Participants were excluded if they (i) were co-habiting with a partner or married (ii) had a comorbid diagnosis of a neurological disorder or (iii) were not able to provide informed consent. The authors used Colaizzi’s (1978) descriptive phenomenological method to analyse the data.

Results

Six females and two males participated in the focus groups. Participants were aged between 23-37 years and had a diagnosis of relapsing-remitting multiple sclerosis. Years since MS diagnosis ranged from 4-16 years. Dating with a diagnosis of MS is a highly personal phenomenon, characterised by many individual differences in values and experiences. Core to the phenomenon were the process of personal decision-making about disclosure of the diagnosis, considerations about dating and couple-focused activities that were limited by pain or fatigue and ongoing adaptation to the fluctuating nature of the condition with partners in new/developing relationships. Planning for and engaging in dating was considered by some participants to be emotionally exhausting.

Conclusions

There were a range of experiences of dating and relationships across the participants in the study. Participants discussed the most salient issues specific to dating with MS including diagnosis

Background

The enhancement of recruitment strategies has become an important objective for many clinical trials and though research has investigated a variety of research design manipulations in this respect, there is a dearth of research on the perspectives of those who decline participate. Such exploration is also important to consider given that those who decline is often not accounted for in terms of accurately representing the population under investigation. Though this ‘flaw’ is inherent in all research that studies human participants, enhanced efforts to diminish decline and increase recruitment is not only important for statistical purposes, but also for strengthening the validity of conclusions regarding implementation in ‘real-world’ scenarios.

Objectives

To explore individuals’ decisions to decline participation in research trialling a Cognitive Occupation-Based program for people with MS (COB-MS) thus, informing feasibility assessment of the trial; and to extend research on recruitment to randomised controlled trials, more generally.

Methods

Seven semi-structured telephone interviews were conducted with willing participants who had previously declined to participate in COB-MS. Data were examined through thematic analysis, via an iterative, recursive process; characterised by continual re-reading of the data, data coding and thematic identification (e.g. development of categories/themes and hierarchical ordering). Thematic analysis facilitated the exploration of potentially important factors that required consideration in an under-researched topic. Subsequently, findings were presented to the public and patient involvement (PPI) panel for consultation regarding the implications of these findings.

Results

Results are presented and discussed in light of extant theory and research. Preliminary results suggest that reasons for declining may include misinterpretation of the participant information sheet, feelings regarding appropriateness of their candidacy for COB-MS, inability to commit to the COB-MS program and particular issues regarding the design of the study and/or program. Including perspectives of PPI panel added valuable insights that supported fuller interpretation and ensured ‘trustworthiness’ to the data.

Conclusions

Though reasons for declining to participate can be many and diverse, some could be avoided through further consideration and ‘amendment’ during future trial development. Development of program-specific Patient & Public Involvement panels may be particularly useful in this context. Despite the numbers who declined to participate, the COB-MS trial was well received by those who did not participate, who expressed finding the program to be acceptable and accessible.

Background

With an average age of onset of about 20-40 years, MS usually manifests during early adulthood, which is considered to be a critical period for the development and maintenance of relationships – particularly dating and romantic relationships. People with MS can experience sexual dysfunction, fatigue, pain, reduced mood and bladder/bowel dysfunction. These difficulties can affect a person’s ability to participate in many meaningful activities, including those that affect relationships – dating, preparing meals, engaging in sexual intercourse and others.

Research in the area has explored the experiences of people with MS in long-term relationships or in marriage. However, an increasing number of people are not in long-term relationships in their 20’s, 30’s and beyond. It is known that dating or entering romantic relationships has been shown to be difficult for those with physical disabilities who face stigma, negative societal attitudes and the fear of requiring care from potential partners. The experience of those with a progressive, complex condition like MS has not been explored in detail to date.

Objectives

To develop a rich understanding of the impact of MS on romantic relationships and occupations related to dating.

To better understand how living with a progressive, early-onset condition such as MS, interacts with/influences developing romantic relationships.

Methods

This study used a descriptive phenomenological design. Data were collected through two online focus group. A purposive sampling strategy was implemented to identify participants that have relevant knowledge or experience to address the research topic. Participants self-recruited by contacting the authors. Participants were excluded if they (i) were co-habiting with a partner or married (ii) had a comorbid diagnosis of a neurological disorder or (iii) were not able to provide informed consent. The authors used Colaizzi’s (1978) descriptive phenomenological method to analyse the data.

Results

Six females and two males participated in the focus groups. Participants were aged between 23-37 years and had a diagnosis of relapsing-remitting multiple sclerosis. Years since MS diagnosis ranged from 4-16 years. Dating with a diagnosis of MS is a highly personal phenomenon, characterised by many individual differences in values and experiences. Core to the phenomenon were the process of personal decision-making about disclosure of the diagnosis, considerations about dating and couple-focused activities that were limited by pain or fatigue and ongoing adaptation to the fluctuating nature of the condition with partners in new/developing relationships. Planning for and engaging in dating was considered by some participants to be emotionally exhausting.

Conclusions

There were a range of experiences of dating and relationships across the participants in the study. Participants discussed the most salient issues specific to dating with MS including diagnosis